Bill and Julie live in thrifty middle-class wedded bliss with their 12-year-old son Sean. Julie brings home the bacon while Bill keeps house and frets over his never-ending PhD thesis: an anthropological study of the role of men in society. All is relatively well until Julie’s ex-fiancé, the dashing and successful Blake Morgan, returns to Winnipeg—with his wife and kids.While Bill takes solace in Blake’s premature grey and pot belly, next to Blake’s professional success Bill feels emasc …

Ryan Knighton's humorous and perceptive tales of fatherhood take us inside an unusual new family, one bound by its father's particular darkness and light.

C'mon Papa is Ryan Knighton's heartbreaking and hilarious voyage through the first year of fatherhood. Becoming a father is a stressful, daunting rite of passage to be sure, but for a blind father, the fears are unimaginably heightened. Ryan will have to find novel ways to adapt to nearly every aspect of parenting: the most basic skills are nea …

Neighbourhoods have an ecology. The one surrounding our cyberpunk loft made sense. The people were as eccentric as our building’s colour scheme, and as busy as our industrial habitat. We had variety, biodiversity and pluralism, except for one glaring and uniform fact: nobody had kids.

Sure, one guy on the fourth floor had his daughter two days a week. But that was it. We enjoyed couples galore, but we were a kid-free Romper Room. The graffiti in the elevator was actually the work of adults. What sort would carve the word “loaf” was another matter. So, though I say we were a kid-free zone, there seemed to be exceptions. In our building we made it our pride and priority to indulge ourselves, to turn volume dials up, to erect drill presses beside our sofas, to throw raves on a Wednesday and continue them until Friday, to sleep in a medieval fantasy, and, above all, to remain stuck in the years when Judas Priest was popular. We were a plaza of Peter Pans. Me included.

The hallmark of my youth had always been recklessness. Blindness had cured much of that in my character, enforcing a more cautious person to take over. Not that I always agreed with the rules, but my body and safety demanded I live more slowly, more deliberately, and even more habitually. To that end, the neighbourhood where we’d lived before we decided to have a family had long served as an extension of my white cane. While I’d tapped around those same six blocks for ten years, living in a variety of basement suites and rooms, my mind had equally worn its own path, memorizing and building a map that I lived in. If pressed, and if nothing radical or spontaneous happened, I could have walked my old neighbourhood without a cane. Slowly, of course, and with a minor amount of pole-to-face trauma, but I could have done it. My life had a safety net of well-worn routine, and everybody knew me. Not here, though, not in Neverland’s warehouse district.

Industrial parks are imagined for cars and trucks, not blind men. Grocery stores don’t locate themselves within shuffling distance of a Muffler King. Here, I was a kid sleeping in the storage space of the city. Every time I came home with bruises and near-death experiences, it became clearer that I needed foam. Foam on every mailbox, signpost, chain link fence, bus bench and truck grille. Foam on every bike rack, curb, crack in the sidewalk, garbage bin and discarded pallet. It would take me years to learn this place to the degree I’d known my old neighbourhood. The work would take enough time, too, that one day I’d be forced to wrap my child in foam, for her own good. I grew to understand this with every scab and fall, and with the startle from every truck that honked me out of its path. Once, I was even moved by something more surprising and painful.

The busy intersection at Main Street and Great Northern Way was a chronic problem. I had to deal with it every time I walked to the gym, or headed into the city. Its crosswalk is likely the longest in town, and cuts across four lanes of traffic at an angle. An angle. It wouldn’t give sighted folks pause, but it’s hard enough to hold a straight line when you’re blind, let alone hold a straight line on an angle.

One afternoon I stepped into the crosswalk, only to hear a car zip towards me. Its bumper scooped my knees and dropped me to the ground. The real surprise, though, was the specific bumper that hit me. It was a rear one. I’d been backed over at an intersection. From around a corner.

I got back on my feet, sore and alarmed, as the driver jumped out of his car. I half-expected him to walk backwards towards me.

“Wow,” he said. “Gotta watch where you’re going.”

Sometimes I don’t have the patience to explain my body. Instead I wound up and punted his tail light. It didn’t shatter. My sneaker just made a soft, rubbery thud. I loathed my comfortable shoes.

“Hey,” the driver said, “don’t do that.”

By this point other drivers were honking, cheering on the blind guy who was about to kick the crap out of a car. Backing over a blind man must’ve looked bad. Maybe that’s why, without a word, the driver jumped back into his car and sped away. Forwards.

I shuffled back to the loft feeling both defeated and humiliated. I made it home all right, but when I got there it didn’t feel safe and small. I was the resident of an outpost. I wanted to go home, back to the place I knew. My old neighbourhood was something to build upon. Familiar. A place for family.

What made my dream home so fantastic also made it impractical. The attraction was the same thing that made Dorian Gray’s portrait seem like a bargain. I hadn’t come here to start a family, I’d come here to live a dream of youth. But you’ve got to clear the nest of such things. You’ve got to kill your darlings to make room.

• • •

Tracy was getting ready for work one morning when she opened the bathroom door and called for me. Her voice was sharp and purposeful, a tone that indicated something was happening. We’d already dealt with a burst water pipe in the kitchen. It had flooded the loft while we were at work, and the water had run down into the closets of our neighbours. When Tracy called from the bathroom, I expected more trouble in our dream. More growing pains.

“I think I’m pregnant,” she said.

“Are you sure?”

“I’ve taken the test twice.”

“The colour, did it change?”

“It’s an X or a circle.”

A father for less than thirty seconds and I was already learning interesting things.

“And it’s the good mark?” I asked.

I could hear the smile on her face.

When I hugged her, my body lit up with relief, as if we’d finally made it back after a long time away. Something in me was new. I was both older, and younger, than ever before.

The desire to move suddenly became urgent.

From the get-go Tracy’s body handled it well. By eight weeks she still had no significant morning sickness, only a touch of nausea here and there. Not that it was easy. A tiredness crept over her that would shame narcoleptics. She could sleep anytime, anywhere, in any position. No hyperbole. I mean, we’d be at the dinner table, and I’d be in mid-sentence when I’d detect a fresh, eerie silence in the room, the kind that didn’t sound to my blind man’s ears like somebody listening. I’d just carry on with dinner, and hope that she’d made it to bed this time.

The need to sleep didn’t curtail Tracy’s drive, however. A new case of nesting was well under way. As soon as we started the hunt for a more suitable home, we lucked upon a townhouse back in our old neighbourhood. It had two bedrooms, real walls and no clouds, no protective foam necessary. Situated on a street well within my spatial memory, it seemed like a helpful and safe place to grow into fatherhood, and for Tracy to trust my body with a stroller. Then again, I wasn’t sure yet how a stroller was even possible. I was already perplexed by the problem of how I would push a pram and swing my white cane at the same time. Aiming myself, the baby and the buggy would be necessary. I’m not known for my aim.

Tracy loves to move, pregnant or not, so she paced herself and organized a couple of boxes a day, or wrapped breakables in newspaper, or labelled, then alphabetized, then stacked, but only a bit at a time. Between tasks she took her vitamins, or laid her head down and snoozed beside the tape gun. Meanwhile, I talked. Or, more precisely, I talked out my anxiety.

Fatherhood, that train I heard a-comin’, had stoked a few new fires of worry in my belly— nothing specific I could name yet— but luckily the move offered something else to consider, and something productive to focus my anxiety on. Basically my paternal jitters manifested in an obsession with any irrelevant object. I fixated. I worried that something might get away. Don’t forget the egg whisk. Don’t forget the shoehorn. That sort of thing. I suspect it was a blind guy fixation, too. Nothing was in its proper spot any more. My familiar world seemed to be disappearing all over again. The hope was that it would all somehow reappear in the next apartment, safe and unbroken, so in my mind’s eye, I saw the smallest things and clung to them for hope. If my box of ear plugs made it to the next life, then surely everything else above its value and importance would arrive, including us.

To that end, I’d often lie awake at night and take inventory of our belongings, then wake Tracy and discuss what might have gone AWOL.

“Babe? You awake? Did you pack my jump rope?”

Tracy would, at most, grumble, less than pleased with my attention to detail. But I’d persist.

“I’ll just go put it on the kitchen counter, okay?”

“Whatever,” she’d say, barely stirring.

“Beside the cordless drill.”

“Uh huh.”

“Next to the meat thermometer. Can’t forget that.”

That’s pretty much how I spent the month prior to our move. Otherwise, when I wasn’t trying to keep everything in mind, I was teaching at the college.

One morning as I shaved, I was mulling over that day’s lesson plan. Even though I instruct undergraduates how to compose essays or, at the very least, to appreciate a nice sentence, I have yet to be persuaded that the world suits anything called a “thesis statement.” You just don’t find them anywhere, or at least I’ve yet to polish off anything that would prompt me to say, “Quick, Tracy! Come check out my thesis statement! I think it’s got a real handle on things!”

As I mulled over what to say on the subject, Tracy appeared at the bathroom door, smelling of perfume, ready to go to work. She spoke the first words of the day. Our thesis statement.

“I’m bleeding.”

She sounded panicky, and confused. She’d almost phrased it as a question.

“I’m sure it’s normal. I mean, isn’t that normal?”

So many things about Tracy’s body were changing that I couldn’t tell what was to be expected any more.

“No,” she said, “Bleeding now isn’t normal. It isn’t good at all. The books don’t say anything good about it.”

“I’m sure it’s fine,” I said. “Let’s just call the doctor and make an appointment, just to be certain. But I’m sure it’s . . .”

Her fingers were already dialling.

By early afternoon we’d seen our doctor, we’d gone for an ultrasound, and we’d learned that the baby was gone. No heartbeat could be found. That fast, that blunt. That final. Maybe there had never been a heartbeat. We were only eight weeks pregnant. Most people— our friends and co- workers—didn’t even know.

Though miscarriage is not the final story of our family, it is the context in which my fatherhood, and Tracy’s motherhood, was born. We began in exile and flux. A painful and anxious uncertainty tempered the joy of taking the next step in our lives. Could I be a father? Would I? Should we? What were our bodies telling us, if anything? We had moved into parenthood, only to be kicked out again. Now we lived between homes, between grief and hope, life and death, restless and, to a degree, lost.

As soon as we returned home from the hospital, our old life tried to pick up where it had left off. When at your most vulnerable, reality has a way of punishing you with its banality. Are you hungry? No. But can you turn the radio on? Sure. Did you arrange the moving insurance?

In one day our pregnancy had become a parenthesis. An aside. Now closed. Still, we crawled into bed that night and slept with a question between us. How do we begin, again?

I guess you have to clear the nest. Let your darlings go. Some, to the ground.

• • •

Somewhere outside a busy Vancouver grocery store, Tracy yanked me around another bike rack. How’s a fella going to start a family if he keeps castrating himself against sidewalk amenities? That was my thought, when I heard a ringing. I’m sure a dozen other people reached into their pockets, but it was Tracy’s phone.

I couldn’t piece together who she was talking to, but somebody wanted to see us. Sooner rather than later, it seemed. When she hung up, she paused for a moment, then made a puzzled sound.

“That was the doctor’s office,” she said. “They asked to see us this afternoon.”

“Why?”

“A follow-up appointment. See how I’m doing, I guess. How we’re doing”

It sounded reasonable and caring, but unlikely. Doctors, in my experience, don’t have the time or resources to personally call up their patients. Definitely not to request a second post-miscarriage chat. Not a chance. Tracy’s pause and puzzled sound indicated that she was thinking the same thing. Not even a month had passed. We weren’t supposed to try to become pregnant again quite so soon, we already knew that. What more could there be to discuss? It’s not like we needed a doctor’s nudge about planned parenthood.

To this day, whenever I hear the page of a magazine flip, I think of pelvic exams. We were in a waiting room and waiting for one. I listened to Tracy thumb through Marie Claire while I eavesdropped on the receptionists and the other patients, all of them flipping other magazines, perhaps readying other pelvises for other examinations. I’d heard the same scene the day we confirmed we were pregnant, and again when we waited in the hospital for a d & c to remove any residual tissue from the miscarriage. It makes you think differently about the magazine industry and its audience.

When it was finally our turn, and the doctor appeared, she was quick and to the point. The exam began, then it was over. The doctor rolled back on her little stool. She read through Tracy’s file as she spoke. I could hear pages flipping. Maybe the doctor was brushing up on the new spring fashions, too. Maybe she had a pelvic exam scheduled for herself.

“You’re feeling well?” she asked.

“As well as can be expected,” Tracy said.

“And you?” the doctor asked.

“Me?” I said. “I’m okay if she’s okay.”

Pages flipped. The doctor offered no reply. I didn’t like her response. I’d set her up, but she hadn’t reassured me that I was allowed to feel all right since Tracy was fine, too.

“The tissue that we removed during the d & c was biopsied,” the doctor said. “It’s a standard procedure. The results indicate that the pregnancy was actually molar. Typically we’d have seen that on the ultrasound, but— do you know what a molar pregnancy is?”

We blanked.

“I should clarify that yours was what we consider a partial molar,” added the doctor.

Good, I thought. Things were only half as bad as they seemed. Or partially as bad.

“Basically,” the doctor continued, “in your case the egg was fertilized by two sperm.”

Tracy and I had the same thought, but just one of us said something about twins.

“No,” the doctor said, “Unfortunately the chromosomes are doubled, and that causes the problem. It creates these cells, these molar cells. We intervened in your miscarriage very early. That’s possibly why we didn’t see the presence of these cells on the ultrasound, too.”

“Why is it called a molar pregnancy?” I asked. “As in teeth?”

The doctor laughed. This hadn’t been my intention.

“It has nothing to do with teeth, at least not as far as I know,” she said.

Medical metaphors are perplexing. Often they don’t make clear pictures in a person’s mind. Like most people, I suspect, I like to have a picture in my mind. Of most things, at least. Ever had an episode of the sitcom Full House described to you? I rest my case.

“Well, what about a mole? Is it something to do with the cells and how they behave? Are they, you know, mole-like?”

“Could be.”

She didn’t sound convinced. Not of anything other than she had a metaphor-fixated patient.

“But there must be some reason they call it that. I mean, why would you use a term like molar if—”

I could feel that Tracy was kicking me in her mind with an imaginary steel-toed boot, telling me to can it. I let the metaphor go. If a molar pregnancy meant something could be burrowing, I doubted Tracy wanted to know.

That’s when my gal cut through semantics to the real stuff.

“So what does this mean?” she said.

The doctor seemed relieved to be back on scientific turf, away from its language.

“Yes,” she said, and clapped Tracy’s file shut, “what it means is this: we need you to have a few blood tests over the next couple of weeks. That’s all. We watch the growth hormone levels in your body. Since you’re no longer pregnant, they should go down.”

“And if they don’t?” Tracy asked. Her voice was stone.

“If some of the molar cells remain, and if they’re dividing, the hormone levels will rise. More there, more to feed, see?”

For once I could see. What she was describing was a cellular infestation. I’m surprised nobody had worded it that way.

Tracy sat in a chair opposite me. She was just far enough away that I couldn’t reach for her hand, or pat her thigh, or offer something, without drawing attention to the gesture. She’s proud and reserved. I decided to let her be, to protect at least that much.

“What we need to do is take some blood today and take some next week, to monitor that your levels are going down. Typically they do.”

“And if they don’t,” Tracy asked. Her stone voice had a quiver now. Earthquake.

“Not to worry,” the doctor said. A flash of teeth caged her words. “There are a variety of options. We’ll visit those in the exceptional circumstance that we need to. It is treatable. Really, it’s very unlikely, though.”

“How unlikely?” I asked.

“The chances are very, very remote. About five percent.”

“And how common is a molar pregnancy?” I asked.

“Oh, maybe one in a thousand.”

Numbers of this order are intended to reassure people, but I had yet to experience much relief. Here was a physician telling us that we’d already gone from the wrong side of a typical one-in-fifteen chance of miscarriage, to the short straw on a one-in-a-thousand chance of a cellular disorder. Now we were crapshooting a one-in-twenty chance of something else. It seemed to me that every time we participated in something rare, our chances of getting rarer increased.

I’d like to believe there’s safety in numbers, but there isn’t. Put it this way. If you have a one-in-a-million chance of dying in a plane crash, statistics would definitely be on your side if you planned to wear a bear costume and ride a unicycle to your seat. That should be better odds of survival than a parachute, right? I mean, what are the chances of a person in a bear costume, one with a unicycle in the overhead storage bin, dying in a plane crash? As rare as they get.

If numbers really worked that way, rather than waiting for Tracy’s ninety-five percent chance of those pernicious little cells suffering a hormone famine, we should have been out pricing unicycles after we left the doctor’s office. Another health insurance, you might say.

Two blood tests later, we learned that Tracy’s hormone levels were rising, not diminishing. Her body thought she was pregnant, but she wasn’t. Cells were dividing. We went into full alarm. We were also officially beyond the realm of our general practitioner’s skill. An appointment was made for us with a specialist. He was, from what Tracy told me, a tidy and charming young man whose hands gestured as he spoke, his gestures made with equal articulation.

I don’t remember what was said first, or how we directed our small talk to some hard information about what options we faced. I do recall, however, that we rocketed to the fact there was one option and only one.

“Chemotherapy,” he said. “You’ll need to begin treatment right away.”

A placenta is a miraculous and peculiar creation. It effectively behaves like a benign cancer, attaching itself to a woman’s system, feeding off it, and growing. But, being benign, a placenta is also programmed to detach. To destroy itself, unlike a cancer. These cells, these molar cells, were related to the placenta. They didn’t know when to quit, though, and so they grew, and fed, and grew, and if left to themselves would spread to the brain and lungs. Not cancer, but cancer-like. Lethal, albeit vulnerable.

“I would guess it will take a treatment or two,” the gynecologist said. “The sooner the better. The less we’re treating, the less treatment necessary.”

Two weeks later, the morning of Tracy’s first treatment, we called a taxi. When the yellow blur pulled up to our house, I was saddened, struck by a sharp, then deflating sensation. I couldn’t drive my wife to the cancer clinic. She’d be in no condition to drive herself home, either, so here we were, inviting a stranger along, into a place that had no room for strangers. I would have given my hearing to be able to drive that day.

In the back seat we were surrounded by bags. Our arms were filled with Tracy’s pillows, some home-cooked food, books, needlepoint, Sudoku collections, and a portable DVD player, among other things. She was only going overnight, but the intensity of what she would experience asked for more distraction and comfort than a week away from home in any other circumstances. As I shut the cab door, I gave the driver instructions.

“We’re going to the BC Cancer Agency,” I said. “Do you know where that is?”

He did. He’d delivered blood there before. As we drove, all of us silent, Tracy caught the cabbie’s eyes as he glanced into his rear-view mirror. He was looking at me. His eyes were filled with sympathy—Tracy said others would do this, too. The same look was visited upon me by folks at the cancer agency lobby, as well as the families and friends of other patients who passed us in the hallway as we searched for the nurse’s station. Everybody saw a blind, bald man and assumed there was cancer behind my hairstyle. Perhaps behind my blindness.

But I was glad when Tracy told me about the looks. I decoyed attention from her. I could do so little for her now, so I was happy to have the job of a red-herring patient. I absorbed the pity for her. It was one less toxicity, maybe.

In a narrow room, at the end of a long, disinfected hallway, we were guided to a bed by a chipper and quick nurse. Tracy shared the room with a Chinese woman who occupied the only other bed, half-hidden behind a curtain. The woman’s nurse and her family were circled around the bed, and in a flap about something. The Price Is Right blasted from the tiny TV above them. Tracy changed and climbed into her own bed, then began arranging her things for the overnight stay.

Soon the picture of what was happening next door came into focus. As Tracy unpacked, I listened to the next-bed woman’s family. They struggled to translate a nurse’s questions and instructions. Between short bursts of Chinese, the woman moaned in pain. The room smelled stale and heavy. Sour and hot. It would only thicken over the day. This was breakfast time. This was a fresh new start.

Our chipper nurse finished taking Tracy’s vitals, and began to insert an IV drip into her wrist. This would be the delivery mechanism for the chemo. But the needle seemed to be giving some trouble, then a lot of trouble. The nurse was on her third attempt at finding a vein when the situation next door reached a boiling point. The neighbouring nurse was flustered, as was the family. The nurse spoke slow and loud.

“Has she been vomiting, or experiencing diarrhea?”

The family spoke among themselves. The woman moaned.

“Vomiting?” The nurse repeated. “Tummy upset?”

“Maybe I’ll have to try the other arm,” Tracy’s nurse said. “This one won’t seem to take.”

She pricked Tracy again, where four previous holes were already abandoned and swollen.

A wave of panic broke from the family around the next bed.

“No!” the Chinese woman’s nurse shouted. “No getting up. You must tell her to stay in bed. She kept getting up last night and— no, down, in bed, please!”

“She go bathroom,” a family member said. “She was bathroom. She is gone.”

Folks scrambled for a bedpan. Tracy tried to focus her attention somewhere else. Her own end of the room wasn’t a viable option. The nurse was on her sixth attempt at finding a vein.

“We need to get you to relax,” she said, both frustrated and apologetic. “When our bodies are stressed, they defend themselves. Veins dive down further from the surface. It’s a form of self-protection. Yours are pretty defensive.”

The chaos next to us focused on arranging the family around the woman to help lift her into a wheelchair, to take her to a bathroom. It wasn’t happening, though, because the woman was too frail, or too upset. Tracy was upset, too. Her bruised and bleeding arms were wrapped in thick hot towels in an attempt to coax her veins back to the surface. She said she felt like a perversion of the Michelin man.

Around the time Tracy’s IV finally took, a woman approached the bed. She had a thick Scottish accent, comforting like good stew, and I caught a broad glint of light from her chest. I thought it could be an amulet, not a stethoscope. This was Tracy’s oncologist. She’d prepared the day’s cocktail, and was here to prepare Tracy for the twelve-hour infusion.

I was wary of this doctor from the get-go, although I had no reason to be. My fears attached themselves to the oncologist’s necklace. Why did she wear an amulet? I didn’t want the person responsible for curing my wife to also dabble in the powers of symbols and magic tokens. I felt the same conflict about the airline mechanic who told me the Big Bang never happened, since it wasn’t spoken of in the Bible. Who wants to fly in a plane maintained by a denier of physics? I had a bad feeling. A protective, bad feeling.

The Chinese woman wept. Her family consoled her.

Like me, this woman’s family was here, but exiled from what was happening inside someone they loved. Our bodies enforce a remoteness from one another, a barrier that we spend our lives trying to break through in a variety of ways. We send our voices across a room. A look. We ask for long embraces. We reserve the physical intimacy of touch, taste and smell for so few. For two people lucky enough, a baby bridges and binds the molecular gap between them. We grow close, as they say. Atomic.

Perhaps Tracy’s oncologist, alert to the despair and suffering from the next bed, understood that we were struggling not to see it as our story, too, and how this chapter could end. Whatever cued her, I can say for certain she then gave us the best and most difficult request we’d had from any medical practitioner, albeit a counter-intuitive prescription.

“Let me ask that you do one thing for me, and for yourselves, “ she said. “I don’t want you to identify with any of the other patients here.”

She let the admonition sing for a moment before qualifying her advice.

“You are not them. You don’t have cancer. Chemotherapy just happens to be the effective therapy for molar tissue. It will work, one hundred percent. You will not lose your hair, you will not need radiation or surgery, and when it is over and you are well, you can go on to have a healthy family. I’ll say it again if you like— you will be fine, no question.”

With that, just before Tracy’s infusion began, I remember an incredible lift. For the first time in all of this, a doctor had given us some certainty, and its specific kind of relief. Chemo would be hell on Tracy, no question, but she would be fine. Little, but enough. Few can give that much.

Whenever the doctor came around, she was so casual, cheerful. Certain. Her amulet was bright and cut through the smear of my eyes, and I was happy to catch it.

We reminded ourselves of what the doctor had said whenever things got hard, whenever doubts crept in. A child was possible. We’d have to wait a year before we could try again, to ensure the cells did not return, but that’s all. A year’s down time. The incubation of a pause. It felt like a promise, if we kept it in that light.

The suggested couple of treatments swelled to three, then tipped to four as Tracy’s levels continued to rise. But the amulet also continued to catch light whenever it came around to see how she was doing. After that, five treatments seemed to be the magic number. Then it was revised to six. Finally her levels peaked and began their decline. We hung on to science and certainty, the clarity of the words. “You’ll be fine,” I reminded my gal. “Just a little more to go.”

During her first day of treatment, I sat beside Tracy, we talked, we watched movies and, when she was tired, she slept and I listened to her breathing. Sometimes she’d ask me to get her juice, so I’d open my cane and tap around until I found a nurse who could guide me to a vending machine, or I’d grope about to find one myself on the next floor, or follow noises to the cafeteria for change. In the elevator, if I was alone, I felt nervous and urgent. I had to get back fast, be faster. Be there. Not get lost.

After what seemed an eternity of hallways and closets and wrong turns, I offered the juice to Tracy’s outstretched hand. My own small amulet. My own token of apology for feeling I’d done this to her. Then she restarted the DVD, told me what was going on, and sipped her drink, nursing the gap between us. Us and a family we’d imagined.

Chris Shulgan seemed like an average young urban father: a house in Toronto&rsquo;s hip Queen West neighbourhood, a loving marriage, afternoons at the park with his infant son. But this enviable life concealed a shocking secret: nights of hard drinking that would push him, inevitably, to the city&rsquo;s underbelly, where he bought and smoked crack. At first Shulgan managed to justify his behaviour: the occasional drug binge allowed him to blow off steam, ultimately making him a better, more att …

Walker Brown was born with a genetic mutation so rare that doctors call it an orphan syndrome: perhaps 300 people around the world also live with it. Walker turns twelve in 2008, but he weighs only 54 pounds, is still in diapers, can’t speak and needs to wear special cuffs on his arms so that he can’t continually hit himself. “Sometimes watching him,” Brown writes, “is like looking at the man in the moon – but you know there is actually no man there. But if Walker is so insubstantial …

OneFor the first eight years of Walker's life, every night is the same. The same routine of tiny details, connected in precise order, each mundane, each crucial.

The routine makes the eight years seem long, almost endless, until I try to think about them afterwards, and then eight years evaporate to nothing, because nothing has changed.

Tonight I wake up in the dark to a steady, motorized noise. Something wrong with the water heater. Nnngah. Pause. Nnngah. Nnngah.But it's not the water heater. It's my boy, Walker, grunting as he punches himself in the head, again and again.

He has done this since before he was two. He was born with an impossibly rare genetic mutation, cardiofaciocutaneous syndrome, a technical name for a mash of symptoms. He is globally delayed and can't speak, so I never know what's wrong. No one does. There are just over a hundred people with CFC around the world. The disorder turns up randomly, a misfire that has no certain cause or roots; doctors call it an orphan syndrome because it seems to come from nowhere.

I count the grunts as I pad my way into his room: one a second. To get him to stop hitting himself, I have to lure him back to sleep, which means taking him downstairs and making him a bottle and bringing him back into bed with me.

That sounds simple enough, doesn' t it? But with Walker, everything is complicated. Because of his syndrome, he can' t eat solid food by mouth, or swallow easily. Because he can't eat, he takes in formula through the night via a feeding system. The formula runs along a line from a feedbag and a pump on a metal IV stand, through a hole in Walker's sleeper and into a clever-looking permanent valve in his belly, sometimes known as a G-tube, or mickey. To take him out of bed and down to the kitchen to prepare the bottle that will ease him back to sleep, I have to disconnect the line from the mickey. To do this, I first have to turn off the pump (in the dark, so he doesn't wake up completely) and close the feed line. If I don't clamp the line, the sticky formula pours out onto the bed or the floor (the carpet in Walker's room is pale blue: there are patches that feel like the Gobi Desert under my feet, from all the times I have forgotten). To crimp the tube, I thumb a tiny red plastic roller down a slide. (It's my favourite part of the routine–one thing, at least, is easy, under my control.) I unzip his one-piece sleeper (Walker's small, and grows so slowly he wears the same sleepers for a year and a half at a time), reach inside to unlock the line from the mickey, pull the line out through the hole in his sleeper and hang it on the IV rack that holds the pump and feedbag. Close the mickey, rezip the sleeper. Then I reach in and lift all 45 pounds of Walker from the depths of the crib. He still sleeps in a crib. It's the only way we can keep him in bed at night. He can do a lot of damage on his own._

This isn't a list of complaints. There's no point to complaining. As the mother of another CFC child once told me, "You do what you have to do." If anything, that' s the easy part. The hard part is trying to answer the questions Walker raises in my mind every time I pick him up. What is the value of a life like his–a life lived in the twilight, and often in pain? What is the cost of his life to those around him? "We spend a million dollars to save them," a doctor said to me not long ago. "But then when they're discharged, we ignore them." We were sitting in her office, and she was crying. When I asked her why, she said "Because I see it all the time."

Sometimes watching Walker is like looking at the moon: you see the face of the man in the moon, yet you know there's actually no man there. But if Walker is so insubstantial, why does he feel so important? What is he trying to show me? All I really want to know is what goes on inside his off-shaped head, in his jumped-up heart. But every time I ask, he somehow persuades me to look into my own._

But there is another complication here. Before I can slip downstairs with Walker for a bottle, the bloom of his diaper pillows up around me. He's not toilet-trained. Without a new diaper, he won't fall back to sleep and stop smacking his head and ears. And so we detour from the routine of the feeding tube to the routine of the diaper.

I spin 180 degrees to the battered changing table, wondering, as I do every time, how this will work when he's twenty and I'm sixty. The trick is to pin his arms to keep him from whacking himself. But how do you change a 45-pound boy's brimming diaper while immobilizing both his hands so he doesn't bang his head or (even worse) reach down to scratch his tiny, plum-like but suddenly liberated backside, thereby smearing excrement everywhere? While at the same time immobilizing his feet, because ditto? You can't let your attention wander for a second. All this is done in the dark as well.

But I have my routine. I hold his left hand with my left hand, and tuck his right hand out of commission under my left armpit. I've done it so many times, it's like walking. I keep his heels out of the disaster zone by using my right elbow to stop his knees from bending, and do all the actual nasty business with my right hand. My wife, Johanna, can't manage this alone any longer and sometimes calls me to help her. I am never charming when she does.

And the change itself: a task to be approached with all the delicacy of a munitions expert in a Bond movie defusing an atomic device. The unfolding and positioning of a new nappy; the signature feel of the scratchy Velcro tabs on the soft paper of the nappy, the disbelief that it will ever hold; the immense, surging relief of finally refastening it–we made it! The world is safe again! The reinsertion of his legs into the sleeper.

Now we're ready to head downstairs to make the bottle.

Three flights, taking it in the knees, looking out the landing windows as we go. He's stirring, so I describe the night to him in a low voice. There's no moon tonight and it's damp for November.

In the kitchen, I perform the bottle ritual. The weightless plastic bottle (the third model we tried before we found one that worked, big enough for his not-so-fine motor skills yet light enough for him to hold), the economy-sized vat of Enfamil (whose bulk alone is discouraging, it implies so much), the tricky one-handed titrating of tiny tablespoonfuls of Pablum and oatmeal (he aspirates thin fluids; it took us months to find these exact manageable proportions that produced the exact manageable consistency. I have a head full of these numbers: dosages, warm-up times, the frequency of his bowel movements/scratchings/cries/naps). The nightly pang about the fine film of Pablum dust everywhere: Will we ever again have anything like an ordered life? The second pang, of shame, for having such thoughts in the first place. The rummage in the ever-full blue and white dish drainer (we're always washing something, a pipette or a syringe or a bottle or a medicine measuring cup) for a nipple (but the right nipple, one whose hole I have enlarged into an X, to let the thickened liquid out) and a plastic nipple cap. Pull the nipple into the cap, the satisfying pop as it slips into place. The gonad-shrinking microwave.

Back up three flights. He's still trying to smash his head. Why does he do it? Because he wants to talk, but can't? Because–this is my latest theory–he can't do what he can see other people doing? I'm sure he's aware of his own difference.

Cart him into the bed in his older sister Hayley's room on the third floor where I have been sleeping, so I can be near him. Hayley, meanwhile, is downstairs with her mother in our bedroom so they can get some sleep. We take turns like this, reduced by the boy to bedroom Bedouins. Neither Johanna nor I has slept two full nights in a row in eight years. We both work during the day. After the first six months, I stopped noticing how tired I was: my days and nights simply became more elastic and similar.

Lay him down on the bed. Oh, fuck me dead–forgot the pump! Build a wall of pillows around him so he doesn't escape or fall off the bed while I nip back into the other room. Remember 4 cc's (or is it 6?) of chloral hydrate, prescribed for sleep and to calm his self-mutilation. (I tried a dose once: the kick of a double martini. William S. Burroughs was thrown out of school as a kid for experimenting with it.) Reprogram the pump, restart the familiar mild repetitive whine, his night pulse.

At last I sink into bed beside him and pull the wriggling boy close. He begins to hit his head again, and because we know of no acceptable way to restrain him mechanically, I hold down his small right hand with my large right one. This brings his left hand up to his other ear–"he's a genius for finding ways to hurt himself," his teacher told me the other day. I grab his left in my left, which I have threaded behind his head. He begins to kick himself in the crotch with his right heel, so hard it makes me wince. I run my big leg over his little leg, and lay my right hand (holding his right hand) on his left thigh, to keep it still. He's stronger than he looks. Under his birdy limbs, he's granite. He'll mash his ears to a pulp if no one stops him.

There is a chance, of course, that none of this will work. Every once in a while, the chloral hydrate rebounds and transforms him into a giggling drunk. It's not unusual to have to perform the entire routine again an hour later. When he has a cold (eight, ten times a year), he coughs himself awake every twenty minutes. Sometimes he cries for hours for no reason. There are nights when nothing works, and nights when he is up and at it, laughing and playing and crawling all over me. I don't mind those nights, tired as I am: his sight is poor, but in the dark we're equal, and I know this makes him happy. In the night, there can be stretches when he is no different from any normal lively boy. It makes me almost cry to tell you that.

Tonight is a lucky night: I can feel him slip off after ten minutes. He stops grunting, strokes his bottle, turns his back and jams his bony little ass into my hip, a sure sign. He falls asleep.

I hurry after him. For all this nightly nightmare–the years of desperate worry and illness and chronic sleep deprivation, the havoc he has caused in our lives, threatening our marriage and our finances and our sanity–I long for the moment when he lets his crazy formless body fall asleep against me. For a short while, I feel like a regular little boy's father. Sometimes I think this is his gift to me–parcelled out, to show me how rare and valuable it is. Walker, my teacher, my sweet, sweet, lost and broken boy._

In the early years, after Walker was first diagnosed with CFC syndrome at the age of seven months, the estimated number of people who suffered from the syndrome changed every time we visited the doctor. The medical profession–at least the handful of doctors who studied cardiofaciocutaneous syndrome, or knew what it was–was learning about the syndrome as we did. The name itself was nothing more than an amalgam of the syndrome' s most prominent symptoms: cardio, for ever-present murmurs and malformations and enlargements of the heart; facio, for the facial dysmorphia that was its signal characteristic, a prominent brow and down-sloping eyes; cutaneous, for its many skin irregularities. The first time a geneticist ever described the syndrome to me, he told me there were eight other children in the world with CFC. Eight: it wasn't possible. Surely we had been blasted out to an unknown galaxy.

But within a year, after our doctors had begun to sweep the medical literature for references to CFC, I was informed there were 20 cases, because more had turned up in Italy. Then there were 40. (The speed with which the number changed made me sneer at the doctors: they were trained medical professionals, surely they ought to know more than we did.) More than 100 cases of CFC have been reported since the syndrome was first described publicly in three people in 1979; some estimates are as high as 300. Everything about the syndrome was a mystery, an unknown. It was 1986 before it had a name. Symptoms ranged wildly in severity and kind. (Some researchers believe there may be thousands of people with CFC, but with symptoms so mild the condition has never been noticed.) Some CFC children hit themselves, though most didn't. Some could speak or sign. All but a few were anywhere from mildly to severely retarded. Heart defects ranged from serious to unimportant. (Walker had a mild murmur.) Their skin was often sensitive to touch, to the point of agony. Like many CFC children, Walker couldn't chew or swallow easily; he couldn' t speak; his vision and hearing were compromised (he had narrowed optic nerves, one more than the other, and skinny ear canals subject to incessant infection); he was thin and wobbly, "hypotonic" in the medical jargon.

Like virtually all CFC children, he had no eyebrows, sparse curly hair, a prominent brow, wide-set eyes, low-set ears and an often charming cocktail-party personality. The CFC features grew more noticeable, more "abnormal," as he grew older. I assumed my little boy was an average example of the condition. It turned out I was wrong. It turned out the average didn't exist– not here.

Nor did those conditions change. Today, at thirteen, mentally, developmentally– I'm terrified even to write these words–he's somewhere between one and three years old. Physically, he's better off than many CFC children (he doesn't have frequent seizures, doesn't have ulcerated intestines); cognitively, less so. He could live to middle age. Would that be good luck, or bad?

Minus a few new genetic details, this was and still is the sum total of what the medical profession knows about CFC. It isn't widely studied, as autism is. Most parents of CFC children know more about the affliction than their pediatricians. The CFC population isn't large and politically powerful like that of Down syndrome, which more than 350,000 people live with in North America, and which occurs once in every 800 births. CFC shows up no more often than once in every 300,000 births, and possibly as rarely as once in a million. The National Institutes of Health Office of Rare Diseases characterized CFC as "extremely rare," way out at the far, thin end of the statistical branch, alongside bizarre genetic anomalies such as Chédiak—Higashi syndrome, a bleeding disorder caused by platelet dysfunction and white cell abnormalities. There were only two hundred known cases of Chédiak—Higashi, in part because so few born with it ever survived.

Raising Walker was like raising a question mark. I often wanted to tell someone the story, what the adventure felt and smelled and sounded like, what I noticed when I wasn' t running through darkness. But who could relate to such a human anomaly, to the rare and exotic corner of existence where we suddenly found ourselves? Eleven years would pass before I met anyone like him.

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